Thursday, October 18, 2012

Ronald McDonald Volunteer House Banquet

Shad calling out the prize numbers.  He is cool looking or what?   Who has that much confidence at NINE years old LOLOLOL~!~
 
 
 
This picture is Jon and I sharing with the volunteers how much we appreciate the Rochester RMH on the behalf of our family and all other families who stay here!!!  We had the BEST time tonight.  This banquet was to honor the volunteers who had worked on the Annual Thrift Sale for RMH~500 volunteers who work year long to make the sale possible.  This year they made over $330,00 for the upkeep of the RMH!  What sweet people!  So many came up to us and talked with us afterwards.  We are just so overwhelmed with all the volunteer workers that help out here.  It is amazing what is done here, the volunteers do so much stuff.  We've stayed at a few different RMH over the years and there is NO  RMH like Rochester RMH!!!  

This morning I got up early and spent the whole day with Selah.  She had a great day, got to spend an hour with therapist.  She gave me some great ideas and she was so encouraging to us.  She notes everything that Selah does and encourages us on all the progress she makes.  she was VERY responsive today and that was really encouraging to me.  I needed that.   She did have a time when her heart rate went up for a few hours.  She didn't have as high of a heart rate as she usually does & her blood pressure didn't go up too high but it did last for a few hours.   She is starting to wear a "nose" on her trach.  It is a covers her trach and works like a nose to filter air.  It will help us not to have to use the humiderfer all the time once we get home with her.  We are so blessed by the nursing staff here, they work with her trying to do everything they can to help her.  The last few weeks we've had student nurses and they have been wonderful too.  They seem to really care about the patients & the families also. 

We are waiting to hear on our next step with Selah, please keep us in prayer and as always pray for Selah!

Radio Interview

Today Jon and I did a radio interview for the Ronald McD House's annual telethon in the spring.  We have never done a radio show before, it was interesting.  The man who interviewed us was a believer and had a story also...don't we all?  Life is hard and every one's story is different but we all have or will have a story.  He experienced the grace of God through his journey also.  We could relate to the pain and we could also relate to the peace of God that carries us through!

This Wednesday makes NINE weeks since the accident....we are still praying for our Selah.  we ask you to continue to pray for her also.  Our life has not gone back to "normal"  We are still in the same situation, still in the same room, still with a little girl in the hospital...she is better but not the same little girl that we had 9 weeks and 1 day ago...

Today the nurse did say that she saw Selah respond to her also, when she was wanted to get out of the chair.  That was a great uplift to us!  We have some GREAT nurses!!!!  I'm so impressed by the nursing staff here at Strong's.  Of course no one wants to be in the hospital but if you do, this is a good place to be!

We had a crazy day today, everything got out of whack, woke up late, the water was off here for some repairs, then the interview, so Jon went over and stayed with Selah this afternoon.   I went and got Sarah's haircut and mine too.  Sarah looks like a little Amish girl:)  We have some Amish staying at the RMH and I think they think we are converting:)  By the time we got back it was time to feed the kids supper and give baths, eyedrops and do teeth brushing!  I didn't get to go to the hospital today so I'll get up early in the morning and go stay with Selah.  We have to have one parent here with the kids so it makes things a bit more complicated. My good friend who was watching the kids has gone back to work:(   So we spilt up our time with the kids.  We try and keep things as "normal" as possible with the other kids and keep them on the same schedule as we would at home.

The weather has been crazy here!  It has been super cold, in the 20's a few nights and then today it's warm and up in the 70's I had packed away all our summer clothes, of course LOL!    We had hoped for snow:)  The boys were really hoping we'd get some before we leave but I don't know if we will.

Well goodnight all and thanks for the prayers for our baby girl!










Tuesday, October 16, 2012

Waiting.....

We're just waiting on word on our next step.... still don't know all the details but hoping that things will work out for Selah to go to Lakeland Regional.   LRMC will be having a multi disciplinary meeting on Friday to discuss her coming to them.  Please pray that everything will be worked out for her.  So many changes will be coming for out family soon.  Being home will be a huge change for us after these past almost 10 weeks up here. 

Selah seems to be more resting today although she paid attention to Jon this morning as he sang and talked to her.  This afternoon she is just sleepy.  She seems to be on a plateau as far as doing anything new and of course that worries me alot.  Please pray that she is able to cough/gag and start moving her limbs.   She was so sleepy with me, it just worries me!  Please pray!!!!!!

There is alot rolling around in my head today, none of it too spiritual to be sure.  Feeling down and rather alone in this fight for Selah.  We want to see her get the best care, in a setting that we are comfortable with.   No one will fight for your child but yourself but that gets hard.  It's just a shame that things come with such a fight!!

Thinking that Friday will be 10 weeks since we left home....thankful that God has been with us during this time and that our family has been held in the palm of His hands.  When I look back, it amazes me that our family has made it through.  We are living in a small bedroom/bath in the RMH, our kids have just "rolled with the punches" we're making it work for us.  Someone asked if we were homesick...I anaswered "Nope, my family is with me, I don't miss a house!"   We've tried our best to keep things as normal as possible for them and thankfully it's working.  But it is difficult to go through such a valley, in a place that is not home.  We've been blessed by so many folks in the Rochester area to make us feel "at home"  So with every difficulty, we've been blessed.....but it's been a hard walk. 

So please pray for Selah and for us ...thank you!!!!

Sunday, October 14, 2012

Sunday update

Selah was more quiet today but she did enjoy her mouth swabs and she licked it every time!  The nurse saw it and was amazed that she could move her tongue like that.  The nurse was encouraging!  One good thing is Selah has not "stormed" for two days!  Her heart rate didn't go crazy when I got her up and worked with her.  She was more tolerating of me moving her arms and legs and her arms were very easy to move.  Her legs and ankles were less rigid than they have been so that is a good thing also.  Please continue to pray for her!  We treasure every little positive thing! 

Please pray for a member of our church, she just found out she has a non cancerous tumor in her stomach.  She is a sweet women & has served God for many years faithfully.

Thank you for all your prayers!!!

Saturday, October 13, 2012

Update on a cold and rainy night....

Jon was with Selah today and I was doing 5 loads of laundry....we wanted to ask the nurse to do a gag/cough test on her to see if she'd respond.  The nurse did it and she didn't cough or gag but she clearly didn't like it.  We were disappointed that she didn't respond to it by coughing or gagging.  But she did respond to Jon today in the same way as she had been doing. She again seemed to banter back and to with him.  Today she seemed like she wanted to get out of our car seat and back in bed.  We use her car seat instead of the "therapy chair" it is much more comfortable and has a better head rest.  But she got tired of it and Jon could tell once she was back in bed she was happier. 

We went out to eat with some great friends tonight then we went over to the hospital.  Selah did two new things for me.  When we got there it looked like her mouth was dry so I wiped it out with some lemon flavored swabs, she LICKED the swab with her tongue, several times!!!!!!!!!   We were laughing at her:)  She really responded to it!!!!!!  Then as we were leaving for the night she STRETCHED!!!!!!  Now that might not seem much to someone else but it was a different , more relaxed movement than what posturing is!  Also her arms/hands were relaxed and not clenched, as well as her ankles/feet.  Her knees were really stiff but overall she felt better than usual.  This new movement was so different than posturing.....it looked just like when a newborn stretches....

So I'm sharing each new thing with you all but I'm being honest.  I wish she had the cough/gag response.  I think the doctors would be happier with everything if she did that since it is a basic response that she should have.  Please pray that she will get her cough/gag response back.  That would be a great thing!!!!!!  Thank you all for your prayers!!!!! 

A VERY HAPPY 23rd Anniversary!

Jon and I got married 23 years ago...we eloped and got married at the courthouse after knowing each other for only one month:)  We had slightly known each other in a class two years earlier then got reacquainted when I applied to work at the Talbot House where he was the director.  It was truly love at first (or second) sight.  I didn't really have alot of family and it just seemed right to us to elope:) Crazy but right.... Our life has been full and interesting to say the least....I've never been able to say we had a boring marriage:)  We've been all over the world, had crazy adventures, some hard times and some deep heartaches but we were definitely meant for each other.   We've learned to watch each other's backs and be a "unit" something that is really important in the ministry!!!  Marriage only gets better with time! 

Today we went to Niagara Falls, ate lunch at Denny's (we do that every year) and walked around on the American side.  We had planned to go to NF before all this happened and we don't have USA passports for the girls yet so we didn't bother bringing ours to go to the Canadian side.  NF is one of my favorite places on earth.  When I look at the majesty of it and the beauty I can not help but think how beautiful heaven will be!  It takes my breath away to see it and we've gone there now many times. 

We had so many nice surprises today.  When we got up, one of the other families who works for a certain bakery store had left us a couple of boxes of my favorite snacks!  And we had some cards and a gift card for Applebee's (which we used tonight)  And a cake from the RMH....BUT the biggest gift was from Selah!!!

Jon went over when we got back form NF.  He called me to tell me that he "bantered" with Selah.  Selah didn't really talk before the accident, she babbled like a baby.  But we would make her noises and she'd do them back to us.  Well today Jon made some of her noises to her and she opened her mouth and tried really hard to make them back to him.  This went on back and to for about 30 minutes which is the longest she has ever stayed engaged with us.  The longest time by far, the most before was maybe 5 minutes and she usually was upset when that was happening.  She had seemed to do something like this when she was upset over the last few days even with tears but this time she wasn't upset!  She was almost playful.  THEN she did something we have not seen since the accident.  She began to move her legs.  Now she has had movement called "posturing" which is not good movement.  It is movement that shows a person has terrible brain damage.  Basically all the limbs move at the same time in a kind of drawing up movement.  This was different, she moved one leg, then the other leg at different times and nothing else moved!  That was HUGE!!!!!  She has been much more alert just in the last couple of days too.

We are thrilled!!!!   To be honest, we are trying to stay balanced here, we've been told there could be slight improvements but not to expect any type of change from the cortex part of our brain, just maybe some changes in the brain stem activity.  This looks like above the brain stem to us.   One thing we had also been told with Selah since she already had development delays, it made matters much worse as far as possible improvement.  We had also been told since she went so long with no change, that made things even more bleak.  Usually if they don't see change/some recovery in 2 or 3 weeks after the accident , chances are the recovery is not going to come.   Doctors tell us these things, because that is the way it usually is, they see it all the time.  When I worked as a probation officer, I'd have folks say all the time that they would never get in trouble again and you knew....they probably would....  Why did I know it?   Based on experience...so that is why the doctors tell us these things, it's based on what they have seen and experienced with the brain and near drownings.  They don't tell us these things to upset us or make us cry but to prepare us for what the probable outcome will be.  I truly get tired of negative remarks about doctors, they are not all bad.   I can accept that diagnosis based on medical facts BUT I know we and so many others are asking, begging the God who created this Universe and everything within it, to touch and heal Selah.   When I looked at the scenery today, all I could think is that I know the One who created Niagara Falls....He walks with me through the valley of the shadow of death and I am not afraid!   What a comfort!!!!!

We still don't have our plans for moving Selah.  During this whole time, I've not been in a hurry for her to be moved back to Florida.  Our family is here together and where my family is, is home to me.  I don't' get homesick at all.  We feel she gets better health care here than she could in Florida.  Then last week when we thought we were actually going to go, I started getting ready to go and was looking forward to going home.  But honestly I have truly learned to be content and I'm fine, even living in this rather uncertain state...seems like I've been in that particular state alot this year LOL!  We had to be really flexible as we waited to go to Ukraine and then again once we were in Ukraine....then we waited on the kids' appointments to come up here....really having to "go with the flow"  So I'm fine with that...who knows what is going to happen now?  Maybe she will recover enough to go into the rehab hospital here...?    I do have some friends working on the situation in Florida and I have a few plans if that doesn't work out of getting the media and our congressman involved if necessary but hopefully it won't be necessary! 



We are just trusting God tonight....thank you for all your prayers, please continue praying for our sweet Selah.  She has a long way to go.....we are so thankful for the small steps she has taken and are just praying that they continue!!!!!!